This is an anti-quackery and pro-neurodiversity blog. Most posts here have to do with the author's view that autism is not a new man-made phenomenon, but instead a natural part of our species that has always been with us, and should continue to be. Reasonable corrections and rebuttals are welcome and encouraged.

Saturday, August 26, 2006

Why Biomed Will Always Have Little To Show For Itself

With all the hype about MeB12, DMSA, ALA, GFCF, multivitamins and so forth, you might think that there are good reasons to believe these biomed treatments are in some way effective. The reality is that there is not a single biomed treatment for autism that may be deemed clinically proven – not a single one.

And there are some historical embarrassments in the autism biomed field too. I already discussed Secretin, which Bernard Rimland had claimed to have a 75% improvement rate. This was before double-blind studies showed Secretin to be, at best, as effective as placebo. Don't be surprised if the exact same thing happens to DMSA, MeB12 and the others.

Some readers might be thinking that I'm forgetting Vitamin B6, an old but still popular biomed treatment, which does have some placebo-controlled studies under its belt, many of them showing positive results. But note that Nye & Brice (2005) conducted a detailed literature review and concluded that "due to the small number of studies, the methodological quality of studies, and small sample sizes, no recommendation can be advanced regarding the use of B6-Mg as a treatment for autism."

Multivitamins and supplements could arguably be of benefit to overall health, and thus appear to be effective in treating autism. That is how I interpret the results of Adams & Halloway for example. Readers will note that multivitamins in this study were effective in improving sleep difficulties and gastrointestinal symptoms, but had a non-significant effect (compared to placebo) on autistic features such as language, sociability and behavior. If these results are replicated, it would seem that it is a good idea to use multivitamins with children who have sleeping and gastrointestinal problems. This is probably even the case with non-autistic children.

So why is autism so resistant to biomed treatments? Autism biomed is based on a flawed hypothesis. It assumes that autistic children's brains are just about typical, except for a reversible biochemical imbalance or contamination of some kind. Biomed proponents often compare autism to being drunk or stoned. This, of course, is wishful thinking and fails to acknowledge much of what has been found about autistic neurology and cognition.

Autistic brains are different to neurotypical brains. Of course, some will be closer to neurotypical brains than others, but in general, it is known that autistic brains have a different distribution of grey and white matter, different neuron density, neuron size, different overall volume and so on. Autistic cognition is different to neurotypical cognition, with different strengths and weaknesses apparently. I contend that there is very little biomed treatments can do to compensate for these differences and force an autistic brain to work like a neurotypical brain.

The autism community should do better than engage in wishful thinking and waste all this time and resources with biomed. I suggest that autistic children should (1) be educated by engaging their strengths, (2) allowed to exercise their interests, (3) respected for the unique individuals they are, not defective medical puzzles to be solved, and (4) have their true (proven) medical issues, if any, addressed as medical issues, not as part of their very being, which is what autism is.

25 comments:

It's amazing the wealth of information out there about autistic brains and how that is just cast aside by people like Wakefield. He never talks about the brain except indirectly as it being at the mercy of the gut and whatever it lets into the blood.

The thing about these unproven "treatments" is that people will push them to the limits and beyond of normal safety levels since they are in the mode of experimenting anyway and willing to risk their children's health in order to make them into typical children, or less autistic, at least. Some kids were hurt by overdoses of B6, it created nerve damage as I recall. There are reports of children beginning to have seizures after starting MeB12 injections. A boy a nearly poisoned to death with massive overdoses of Vitamin A at the hands of Dr. Jang, who is still a DAN! doctor. Abubakar was killed by "biomed." Who knows what the long term consequences will be for the kids getting monthly depot plus daily injections of Lupron? Certainly not the Geiers. Some children were very nearly killed by Dr. Edelson, not the one in Oregon, but the one who was in the Georgia. I expect as more people get toy HBOT baloons in their houses and use them against FDA approval, that is with an oxygen concetrator, that there will be children who are burned and families burned out of their homes. There are potential dangers in using the hard-shell HBOT tanks, too. There may be no harm in ALA, but the parents are trusting total idiots with advice like ALA will cure your child of autism, and that leads them down the path to more idiot quacks with bigger promises charging higher fees and apparently using riskier "treatments." How many went to Buttar and decided to add the urine injections just in case? Never mind his IV chelation.

Just this week the following rigorous study showing efficacy of EFAs came out. Mind you, it is a small sample size, but it seems worth pursuing.

I think you need to remember that one of the altie arguments really does make sense. There is no huge financial incentive for research into these areas. Even though there is money to be made in selling EFA's for example, anyone can sell EFA's and so the company paying for the research cannot be ensured a good payoff.

Department of Child and Adolescent Neuropsychiatry, MedicalUniversity of Vienna; Vienna, Austria; and ORYGEN Research Centre,University of Melbourne, Melbourne, Australia.

BACKGROUND: There is increasing evidence that fatty aciddeficiencies or imbalances may contribute to childhoodneurodevelopmental disorders. METHODS: We conducted a randomized,double-blind, placebo-controlled 6-week pilot trial investigating theeffects of 1.5 g/d of omega-3 fatty acids (.84 g/d eicosapentaenoicacid, .7 g/d docosahexaenoic acid) supplementation in 13 children(aged 5 to 17 years) with autistic disorders accompanied by severetantrums, aggression, or self-injurious behavior. The outcome measurewas the Aberrant Behavior Checklist (ABC) at 6 weeks. RESULTS: Weobserved an advantage of omega-3 fatty acids compared with placebo forhyperactivity and stereotypy, each with a large effect size.Repeated-measures ANOVA indicated a trend toward superiority ofomega-3 fatty acids over placebo for hyperactivity. No clinicallyrelevant adverse effects were elicited in either group. CONCLUSIONS:The results of this study provide preliminary evidence that omega-3fatty acids may be an effective treatment for children with autism.

Camille: It's very important for people to consider just not effectiveness, but also safety. With something like vitamin B6, people need to weigh the reports of benefit (which are weak anyway) with the real possibility of peripheral neuropathy. And chelation, in particular, can be dangerous in that chelators not only chelate heavy metals but also minerals and nutrients.

Jennifer: That's an interesting report. Sounds like Omega-3 might help with hyperactivity and "sterotypy"? That's one of those things where it probably helps any child with those characteristics, not just autistic children. In other words, it's not going to do much for autism itself. Maybe Omega-3 is good for everyone?

Omega-3 fatty acids have long been touted as being good for everyone (hence all the food you can get with it listed on the package, like yogurt and eggs) but especially for people who have ADHD. That and fish oil.

I can't speak from personal experience about either, as I haven't tried them (but I may well do so at some point), but one of the kids I worked with in Vancouver did this weird stimmy squinty thing with her eyes until the day her mom gave her cod liver oil. (This kid reacts immediately to anything new introduced into her system; if something is going to 'work' you know it within the hour.)

Which isn't to say that her autism was alleviated, but whatever it was that was making her want to do the weird stimmy thing was definitely helped by the cod liver oil.

From this read-through, it's sounding as though most of the autistic neurological differences are in the physical structure, whereas most treatments are in the (bio)chemical functioning. You're not going to do a lot to change the former with the latter!

Generally those treatments that have found to be useful for autistics are those which are useful to most anyone, namely good / suitable nutrition. If there's something in the diet that causes problems, it should be removed from the diet. If there's something lacking in the diet, it needs to be added in. Doing these things helps the overall functioning of a person, including their abilities to sleep, work, play and learn. But that still doesn't change the fact that they are autistic, AD/HD et cetera!

The children in the EFA study were recruited from a specialized day care center for long-term treatment of autistic children. So, I think that it is reasonable that they might have more agression than average. The outcome measure was the Aberrant Behavior Checklist, which is commonly used to assess the efficacy of pharmacutical drugs on autistic people.

There are other studies with Omega-3, for example this one on depression. They are studying it for bipolar disorder as well. It is believed to help neurodevelopment and retinal health. Omega-3 is one of those things which is just good for you. My only concern would be adverse effects after prolonged use. Can you just take a lot of it indefinitely? And what if you stop taking it?

EFAs are essential to the human body. You need to get them from external sources because you cannot synthesize them yourself. There is an excellent article describing their role in health and disease here.

The only danger of taking too much appears to be prolonged bleeding times. This is dangerous if you are expecting to undergo surgery, for example. Other than that you are always exposed to EFAs in your diet, so moderate supplementation would appear to be very safe.

Thank you so much for my comment over at the blog -- I've been looking over the material at Autism Hub and there's really a wealth of discussion over here. I'm going to add your blog and at least a few others to the blogroll so that my few readers can take advantage of the group resources.

Joseph - you are correct. Alpha-lipoic acid (the supposed chelator) is described here.It is an antioxidant. You will note that they describe many attributes of ALA (the supposed chelator), but chelation is not one of them ;)

It's not the same as alpha-linolenic acid, a plant-derived essential fatty acid.

As a parent who started down the biomed road with my son, I can say that in the beginning I saw what I wanted to see. After several months, my husband and I took a serious look at our son and realized we had spent a lot of time, hope, and money on wishful thinking. We won't make that same mistake again. Our son is a fascinating and brilliant human being who reminds us that when it comes to improving his life, we have to think with our brains, not our hearts.

Thank you for validating our decision to follow the scientific and rational approach to living with autism.

Managermom; If I had quit chelating after a few months, my son would still be, effectively, a vegetable. After two years of chelating, he's made tremendous progress. You gave up too soon. Chelation doesn't work that fast. The only reason Joseph can claim that there is no scientific proof of chelation working is because it's only been used to treat autism for about 6 years. Everyone's still trying to perfect it. You can wait 20 or 30 years until some doctor tells you it works or you can help your kid now. You should talk to some parents who are watching their kids improve rather than listening to these folks who are out to prove that the drug companies caused no harm.

If I had quit chelating after a few months, my son would still be, effectively, a vegetable.

That's, of course, Fore Sam speculating about what might have been.

The only reason Joseph can claim that there is no scientific proof of chelation working is because it's only been used to treat autism for about 6 years.

The only reason I can claim there is no scientific evidence (reserve "proof" for Math please) that chelation works is because there is no scientific evidence that chelation works as an autism treatment. Let's wait for Jim Adams' double-blind study and see. Even though Adams is a DANite, I trust he will report exactly what he sees.

"Adams' study will be useless. It's not long enough. I'll expect you to be knocking it when it is released but you might as well start now."

Is Fore Sam acutally making a little bit of sense here (albeit for the wrong reason). The real reason it will be useless is that it uses DMSA (known, and repeated by Adams himself NOT to cross the blood brain barrier). Aditionally it looks to be dwindling - like a dozen or so participants left from the orginal 60 or so in the beginning. So what's up with that, 48 or so autisitic kids didn't actually have mercury toxicity? Go figure. Incidentially, according to Adams, the "toxicity" threshold level was 100% of the lab's refernece range for non-provoked levels. See the problems with that? Furthermore, it's doubtful that anything other that spot urine mercury levels will be reported as a ratio to creatinine - can you say "big holes in the methodology?"

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I am the parent of a classically autistic boy, and I'm on the spectrum myself. The science of autism is my main area of interest, but I have a general interest in science and data analysis. My formal training is in Computer Science.

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